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Wednesday, May 27, 2009

Everyone who has read Parkinson's Focus Today knows that Steve has arthritis in his knees. It is very unpleasant in his left knee - his PD side. He has trouble walking, hates to kneel because of the constant pain and has a real problem rising from a kneeling position. Which means, no more plumbing repairs around the house. Because he needs a cane to walk, that means no more toting things that need to be moved around. That's kind of inconvenient for me because it means there's just one of us to do the lifting. He is the consultant now.

So a few weeks ago we were trying to snake a graywater drain and I managed to cut up my arms and hurt my thumbs repeatedly and badly. Long boring story but suffice it to say, I had blood dripping, deep abrasions on my thumbs - the wound on one thumb just stopped hurting this morning. (Note: vitamin A & D works better than vitamin E when applied directly to the scabbed area.) The snaking process took place over two weekends during which I managed to reopen the abrasions on both thumbs. I sprayed painkiller every hour to thumbs and arms for several days before easing off to a couple of times a day. And I have a high pain tolerance.

At some point I dug my nails into my palms to try to determine my pain level...or something. That gave me an idea. I wanted to find out how much that knee hurt him. So I took out my trusty hand, pushed those nails into his arm and asked him to tell me when the nails hurt more than the knee. I'm still strong but it took a lot of pressure - far more than the thumb test. So I would say that his pain level is moderately high. Not as high nor as consistent as pains from other conditions but far more painful than my raw burn-like skin which healing and would end.

Which brings me to the point...at last...I'm not one of those old hippy dippys - I was a Girl Scout leader before I had children...so I didn't do drugs (unlike the former President) ...but I am a believer in the use of Medical Marijuana to deal with a variety of conditions, diseases and pain. I know that it relieves some asthma symptoms quite effectively. I know that it is effective in dealing with glaucoma, cancer agonies. It is effective in nausea and vomiting, in wasting syndrome and appetite stimulation as well as neurological symptoms and muscle spasticity.

10/26/09 Correction:
Just last week after recommendation by a Medical Advisory Board, New Mexico add ed the following conditions to the list of those who can apply for the Medical Marijuana Program run by the New Mexico Department of Health:
Severe chronic pain
They did not add the following inflammatory and/or neurodegenerative conditions:
Severe osteoarthritis, Rheumatoid arthritis, Reactive arthritis
Post-polio syndrome
Parkinson's disease
Alzheimer's disease
Inclusion Body Myositis - chronic muscle inflammation and weakness as well as severe chronic pain
The Board under Secretary Alfredo Vigil, MD did not feel there was enough clinical evidence to substantiate the inclusion of the above conditions.

The application for the New Mexico program can be found at http://www.nmhealth.org/marijuana.html You must have a debilitating condition and one which is not helped by standard treatment. Your physician must have informed you of the associated potential risks and benefits. While I know that my husband wouldn't qualify by any current standards as the hinged knee brace offers some assistance for support which relieves some pain; I also know that there are hundreds of thousands of people who are in much worse condition and should qualify.

Only 47 of the 295 applicants have been approved since the New Mexico program inception in July 2007. By contrast in Colorado there are 5,920 patients with registration cards. California, New Mexico and Rhode Island will be the only states which actually allow medical marijuana dispensaries. States with pending legislation, however limited include: Alabama, Connecticut, Illinois, Iowa, Minnesota, Missouri, New Hampshire, New Jersey, New York, North Carolina, Pennsylvania, Tennessee

The Supreme Court declined to hear the challange the validity of the California law.

One last observation. Forget that old "if they try it they'll move on to..." the above symptoms are horrendous and some patients are hoping that they can reduce their morphine and other very strong stuff with some unpleasant side effects and to improve their quality of life. We'll be revisiting this topic.

We stand corrected - and have amended the article to reflect the actual decision of the New Mexico Advisory Board. We also note that severe chronic pain application must be accompanied by a referral from the primary care physicial and from a specialist."Also, any patient in hospice care could qualify." They must petition the Medical Advisory Board They can contact the Medical Canabis Program Staff at 505-827-2321 or medical.cannabis@state.nm.usThere is no indication of the length of time a hospice care patient would have to wait for approval...

A friend of mine who has terminal cancer and has been told he has three months to live, recently tried using marijuana as a last resort. He has now regained appetite, strength and control over pain. It's ridiculous to withhold this natural substance from those who need it.

Montana also has a Medical Marajuana program. However, it also does not allow Medical Marijuana use for PD. I am hoping to get that changed, my Grandfather has PD, and I think it would help him. I have used it for years in the treatment of Basilar Migraines. I had them since I was 6 months old, when I was 20, I tried Marajuana for the first time. After a year I had noticed, that they were gone. As long as I smoke, I have no Migraines. They used to come every 3-6 weeks, and last 6-20 days. I am 34 now and I have been Migraine free, for 14 years.

The stigma and ignorance about Medical Marijuana shocks me. I mean it's one thing when people are willing to ignore a war, or lax oil rig regulations, but ignoring a viable source of pain relief for millions. I mean what will Americans put up with?I'm guessing people don't know just how much m.m. can help with he treatment of these diseases. Or are doctors ignoring m.m. for other reasons? Most importantly: the cost! An MS sufferer can get the benefit of m.m. for about 1/30th the cost or less! Hmm, I guess we can just assume that competing with Big Pharma plays into the Reefer Hysteria, eh? I guess all those free lunches really do add up!The Boomers have wised up. And a lot of celebrities have gone to bat for m.m.. The federal gov't continues to reserve the right to bust m.m. dispensaries and hemp farms. Gee, this sure doesn't look like a democracy now, does it?Well, I don't want to give the impression that m.m. is supported by a fringe element, even if it is. A majority of Americans support m.m. but we don't have it. There's no constituency outside the left coast and a few spots elsewhere. Eventually the laws will change to reflect the medicinal benefits regardless of marijuana's stigma of an exclusively recreational use drug. (That and the cost savings might change minds in high places.)

The question arises, what is the purpose of present day prescriptions? To make one feel better and capable of functioning within normal limits. There is not one statement in the US Constitution that grants powers to regulate one's medical services. There has been no grant by the PEOPLE to cede any right of control over a person's body to the control of the State or the Federal. Unless we consider that Government regards US PEOPLE as Property of the State. Wait, they have...it is called the 14th Amendment where the PEOPLE became Fictional PERSONS, corporate entities! SO says the US Supreme Court.

I don't understand why PD would be excluded, but I use MM.. rarely but when i need it i NEED it. Primary use for me is relaxation of muscles. At times i'm so tense that i cant sleep. HAve tried various sleep meds, but hate the various bad symptoms that result... one or two hits of MM and i sleep like a baby!! -Tom M

My bio: As a Texas law enforcement officer I used marijuana to combat my Parkinson’s disease. GOT YOUR ATTENTION! My agency never knew I used and I am now retired. I was a supervisor, a Texas Commission on Law Enforcement Officer Standards (TCLEOSE) instructor. I was a Cum Laude graduate from Lubbock Christian University. I was elected by my peers as officer of the year for our county Crime Prevention Commission. My story “Looking Down the Barrel” is book of the month in San Diego. It’s about Parkinson’s disease, marijuana, and the struggle with my disease as an employed cop in Texas.

Hi! ... My husband is very sick with Parkinson's Disease. He was diagnosed in 2005, but it became very aggressive by 2012 and he was admitted to Hospital and now is a resident in a local Nursing Home - (and he is only 66 years old!) - Recently, he has been deteriorating cognitively, as well as having more difficulty with movement and pain. I would like to know how to get a copy of your book. Could you please let me know how to order it? ... I would also like to know how to obtain medical marijuana in Canada, when it is not legal - I don't want to rely on buying it from unreliable sources, but I know that my doctor would never consider helping me do anything like this. Thanks! ... "Anonymous" - (for now)

My bio: As a Texas law enforcement officer I used marijuana to combat my Parkinson’s disease. GOT YOUR ATTENTION! My agency never knew I used and I am now retired. I was a supervisor, a Texas Commission on Law Enforcement Officer Standards (TCLEOSE) instructor. I was a Cum Laude graduate from Lubbock Christian University. I was elected by my peers as officer of the year for our county Crime Prevention Commission. My story “Looking Down the Barrel” is book of the month in San Diego. It’s about Parkinson’s disease, marijuana, and the struggle with my disease as an employed cop in Texas.

I think marijuana should be legalized for PD. I have had PD for about ten yrs now. I tried all the drugs and they just made it worse. so I haven't taken anything for PD for about 7 yrs now except I do smoke marijuana . I really don't kno if it helps my symptoms (freezing and balance) but I kno it helps me mentally! im not so self conscious about going out in public and it seems that I have more self confidence. that is all I take .

Brava Barbara,You have pointed out something really important for anyone with a chronic health issue: SELF ESTEEM. You are finding that your use of mm makes it possible to not define yourself as the disease. This attitude should help prevent one of the most insidious symptoms of PD: depression.Thank you so much for your contribution.Mags

I have recently been diagnosed with Parkinson's disease. after suffering for about 2 years but painful shoulders and hand tremors I can barely function. I have been searching for alternative medicines and have been using natural therapies along with diet. I have severe insomnia and nothing that the doctor prescribes will help me. I would like to know how to get ahold of medical marijuana.

While I'm not sure, perhaps other readers have suggestions. It may depend a lot upon where you live. Good luck and don't give up the pursuit; it might very well be worth it. Ask family and friends to help as well. Have you considered speaking to one of your doctors?

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PARKINSON'S NEWS FLASH and ANNOUNCEMENTS

2013While I've been answering email queries, I have not been posting recently. There is news that I am still processing emotionally but the gist is that there appear to be 2 essential forms of Parkinson's disease.

One form is the motor symptom aspect with which we are all familiar. Symptoms respond to treatment and while the disease continues to progress, quality of life can be clearly improved through treatment: medication; supplements; exercise, massage and speech therapies.

The other form of PD is non-motor symptom predominant and here all bets are off. At this point it is felt that early treatment with sinemet may be much more important than previously understood.

Little can be done for some of the symptoms which makes this form far more insidious because early distinctions need to be made for aggressive treatment in an attempt to save cognitive functions.

More will appear on this blog about non-motor symptom predominant Parkinson's disease but until it does it is important for People with a PD diagnosis to be very proactive with their medical support staff. Caregivers need to be better prepared as well.

I want to also let people know that emails are still being answered promptly as they are a much safer way for us to communicate than posting your phone number or email address in a comment section.

2012We will be seeing the Neupro Rotigotine Transdermal Patch in US Pharmacies before the end of the year - no longer waiting on the FDA . UCB indicates a release time as July 2012October 2011 - A new diagnostic tool has been created by the National Parkinson Foundation. This tool is designed for clinicians but that doesn't mean that your medical team will be aware of this resource which can be accessed online, through an iPhone application, or an Android application. The iPhone app screen shot allows you to link to Planning, to common PD symptoms, Diagnostic considerations and to Treatment considerations.July 27, 2011 - Just a few hours ago it was ruled that Federal Funding for hEsc is not prohibitedby federal law and can continue.View the Webcast from the Midwest and Young Onset Parkinsons Conference on June 18, 2011Want to catch up on past seminars - Expert Briefings - offered by the Parkinson's Disease Foundation?Click HereMay 2011 - Patients Like Me has posted a wonderful way to make the most of appointment time with your doctor. You can take a look at the Doctor Visit Sheet at the PLM website.Parkinson's Disease Foundation sponsored two online seminars. Register for Understanding Pain in Parkinson'sTuesday May 24, 2011 at 1:00-2:00 pm EDT.Complementary Approaches to Parkinson's is scheduled for June 28th. Both seminars are archived at PDFAPRIL is Parkinson's Disease Awareness MonthTuesday March 22, 2011 1:00-2:00pm ET PD Expert Briefing: Cognition and PD: What You've Always Wanted to Know But Were Too Afraid to AskI don't know if it is official but there is a grassroots organization calling awareness toMultiple Systems Atrophy - formerly Shy-Drager syndrome -March is MSA Awareness monthwhich is appropriate because April is Parkinson's disease awareness month.Just so you know: The National MS and Parkinson's disease registries Act (HR 1362/S 1273 was expanded to bcome the National Neurological Diseases Surveillance System Act - It will need our support.Just click the linkto be connected to the PDF archived PD Expert Briefing on "Physical Therapy and Parkinson's: What You Need to Know" Although we have been talking about many of the topics, we learned some new tricks.October 22, 2010FDA has recalled the Fentanyl Transdermal Patch used by some advanced stage PD patients for pain. Some patches have been found to release the active ingredient faster than approved specs. The result can be excessive sedation, depressed respiration, hypoventilation and apnea. Patients on both entacapone (Stalevo) and Fentanyl are already at risk for prolonged CNS and respiratory depression. If you have a family member in nursing care, their facility should be notified of this increased risk potential.October 1, 2010From the Michael J Fox Foundation comes the announcement of the launch of the Parkinson's Progression Markers Initiative (PPMI) Study in with the goal of identifying PD biomarkers. Biomarkers may open the door to "disease-modifying therapies." On November 9, 2010 Michael J Fox was featured in an episode of one of my favorite shows The Good Wife on CBS. After his Rescue Me appearances, we love that Mr Fox has grown as an actor. The new role must have been fun. Did you catch him in a reprisal of the role in February 2011. And here we are in 2013 with the Michael J Fox show Thursdays at 9:30/8:30c on NBC. May is ALS monthJanuary 29, 2010 Margot Zobel, founder of The Parkinson's Unity Walk passed away.You can read moreat the Parkinson's Action Network website: and fromThe Parkinson's Unity WalkDecember 14, 2009The FDA has approved the results of the phase IV clinical trials for Azilect resulting in permission to remove the food (Tyramine) restrictions (except for doses above 150 mgs) for this MAO-B inhibitor, as well as concerns regarding combination therapy with certain medications as well as OTC cough/cold medictions. Read more atTeva Pharmaceutical Industries LtdPDF held an online Expert Briefing "What's in the Parkinson's Pipeline?" Led by Dr David G Standaert the briefing April 20, 2010 This excellent briefing is now online in the PDF archives..... On September 28-October 1, 2010 the Global Quilt of the PDF Quilt Project was displayed in Glasgow, Scotland UK at the 2nd World Parkinsons Congress. It represents the work of people from 14 countries contributing 2'x2' panels using photos, illustrations and other mementos to tell the stories of PD. You can see images of the quilt as displayed at PDF. 9/23/09 Results of the ADAGIO study for Azilect(rasagiline) 1 mg appears to be effective for a disease modifying effect.For MJFF commentary by Karl Kieburtz, MD, MPH9/07/09 Only a few more days before James Bowthorpe completes his round the world cycle for PD. He began in London. You can read about his journey by double clicking here6/11/09 The World Health Organization declared the H1N1 Virus to be a global pandemic. Of note: This flu most common among young healthy adults unlike the seasonal flu. This could change as the virus continues to evolve. For US maps, visit the CDC websiteFor WHO information click here5/6/09 The European Medicines Agency (EMEA) recommended removing restrictions on the Neupro Transdermal Patch for PD and RLS in all remaining European countries.Check for update posts about the USA status within the blog - we add them every few months. There is a Named Patient Clinical Trial in 2011. 3/12/09 Don't miss your chance as a diagnosed PD patient to enroll in the genetic testing program offered by 23andMe,Inc as sponsored by the Michael J Fox Foundation, Parkinson's Institute and Sergey Brin of Google. Links are in the articleand also listed under Clinical Trials (altho this is not a clinical trial it is an opportunity to contribute to research.3/09/09 President Obama signed an exective order to lift the Bush ban on federal support for embroyic stem cell research on Monday, March 9th, 2009.And now in 2010 we are waiting to see if the anti-injunction will be permanently lifted.

About Parkinson's Disease

BEWARE the GLUTAMATE

CoQ10, Vitamin B and essential tremor

It has been established that Vitamin B2 (Riboflavin) and high doses of Vitamin B12 can work with CoQ10 to ease tremors.

You can take Vitamin B complex and CoQ10 together at the beginning of the day when you take your first CoQ10.

Do not overdo the B complex vitamins; to avoid forcing your kidneys to overwork eliminating the excess and high doses are contraindicated for some cardiac patients.

Remember that if you are taking levadopa, you may need to time your B6 (pyridoxine) or B complex vitamins carefully. You can still take them separately...especially B2 (riboflavin), B3 (niacin), B9 (folic acid), B12 (cobalamin).

Whether on levodopa or not, the complex can be beneficial to sleeping. A good B complex is also the most economical way to go. The B's are probably most effective when taken a liquid or by injection rather than in tablet form. Capsules are usually better than tablets because they can be easier to swallow and have fewer excipients. There are also effective sublinguals.

EXERCISE REGULARLY to OFFSET PD SYMPTOMS and TO FEEL BETTER

Don't be afraid to try the exercises you find in the margin or articles. Check indices for specifics. Begin with ones which you feel are possible. If you have space or flexibility issues, try another. These exercises are for symptoms you might have now or develop. For PD you need to repeat exercises regularly because the disease continues to work against improvements. And what if they help you to breathe better? To sleep better, to swallow safely? To find ways to maintain your balance? To button your shirt? What if...Those endorphins are waiting for release.

Exercising

on the Total Gym

Tennis ball Hand Exercises -Stretching

To relieve stiffness: Insert ball between fingers as far as you can. Repeat between each finger. Stretching NOT squeezing is the important element of this exercise. Your goal is to prevent muscle tightening.

Yawning As Exercise

A full open-mouth yawn will open your throat - tilt your head back, yawn and feel what happens

ooo O aah A eee

A good exercise for doing in the morning and at night or anytime to open the throat and exercise those swallowing and speaking muscles

Swallowing Problems ???

Try CHEWING GUM...

It's a good workout for the jaws and the throat to improve your ability to swallow. It can help dry mouth but not as much as hard candy or ice chips.

Posture and Gait as a symptom of PD

Lack of arm swing - foot drag - shoulder stoop - small stwps

TURN UP THE VOLUME

An exercise to add adding volume when speaking:

Place your hand on your diaphragm- the stomach area-when reading aloud-that way you can feel what is or is not occurring.

Feel the in-out movement as you breathe? This tells you that you are projecting your voice using your diaphragm, propelling the air from your lungs, rather than speaking from the "top" of your chest..

Little or no movement tells you that you are using your breath alone and not the muscles which propel that air from your lungs. You may not have to speak to the back of the hall, but you might need to speak across a room or even across the table. And don't you hate being asked to repeat yourself?

* * * * * * Smiles * * * * * *

Some people are working backstage, some are playing in the orchestra, some are on stage singing, some are in the audience as critics and some are there to applaud.

Know who, when and where you are.

It's not always going to be the same...Anon

"When we honestly ask ourselves which person in our lives means the most us, we often find that it is those who, instead of giving much advise, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand"

".....every time there are losses there are choices to be made. You choose to live your losses as passages to anger, blame, hatred, depression and resentment, or you choose to let these losses be passages to something new, something wider, and deeper" Henri Nouwen

"The human race has only one really effective weapon and that is laughter." Mark Twain

"Pessimist: One who, when he has the choice of two evils, chooses both." Oscar Wilde

"Be the change you want to see in the world." ..."God has no religion" Mahatma Gandhi

"Every artist was first an amateur." Ralph Waldo Emerson

"There is no reason anyone would want a computer in their home." -- Ken Olson, president, chairman and founder of Digital Equipment Corp.,1977

"64K ought to be enough memory for anybody." -- Bill Gates, 1981

"The longer we dwell on our misfortunes the greater is their power to harm us" Voltaire

"We don't stop playing because we grow old; we grow old because we stop playing." George Bernard Shaw

"Now, here, you see, it takes all the running you cando, to stay in the same place. If you want to get somewhere else, you must run at least twice as fast as that!"

" It's a poor sort of memory that only works backwards."

"She generally gave herself very good advice, (though she very seldom followed it)" Lewis Carroll

"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away." Henry David Thoreau

"Experience is not what happens to you. It is what you do with what happens to you." Aldous Huxley

"The most wasted of all days is one without laughter." - E.E. Cummings

"Old age ain't no place for sissies." Bette Davis

"Nobody can make you feel inferior without your permission." Eleanor Roosevelt

"If a woman has to choose between catching a fly ball and saving an infant's life, she will choose to save the infant's life without even considering if there is a man on base." --Dave Barry

"Do not confuse motion and progress. A rocking horse keeps moving but does not make any progress." Albert A. Montapert

"When a doctor recommends you take a test or have some surgery, ask whether the doctor would suggest that his or her spouse or children go through such a procedure. Contrary to popular belief, doctors can't cure everyone. So why cause unnecessary pain with surgery? I think music and animal therapy can help more than most doctors imagine" Shigeaki Hinohara, 97 year old practicing physician at St Lukes International Hospital in Tokyo and teacher at St Luke's College of Nursing.

A Tulip In Recognition of Parkinson's Disease

OTHER ARTICLES ON PARKINSON'S AND NEUROMOTOR EXERCISES

Please note:

The information and/or reference materials contained herein are intended solely to provide background information. Although there may be medical information, this site specifically does not provide medical advice nor engage in the practice of medicine. Under no circumstance will we recommend a particular treatment for specific individuals. In all cases for medical advice about the conditions, symptoms, exercises, treatment, medications, supplements mentioned herein, a physician should always be consulted.

The purpose of this site is to provide information from the personal viewpoint of a Parkinson's disease patient and his caregiver.

DISCLAIMER

The Food and Drug Administration has not evaluated any of the statements contained on this web site unless otherwise stipulated. The information contained in this article is not intended to diagnose, treat, cure or prevent any disease.

Remember that each person's body is different and will react differently to various herbal, vitamin and mineral supplements. T herefore, any supplementation must be administered on an individual basis.

Use the information found on this web site as precisely that: Information. You and your doctor must make any final decisions. This information is not meant to replace any doctor and patient consultation. This information should in no way replace your personal physician's advice.

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